No Berries

12390854_10153272189153016_644543355571003412_nNo berries for me for 6 months post-transplant. So loading up this morning’s breakfast, aka protein shake, with a bunch – and spinach.

 

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Surgery Update

The surgery went well, The catheter worked fine on its first test. There was/is very little pain from the surgery, except when I use my stomach muscles. So taking it easy in my recliner today. There were some of, um, let’s say related complications with just having surgery, which made for some misery yesterday. But that’s pretty much cleared up now. I canNOT thank everyone enough for the love and prayers offered yesterday. Believe me, we felt them. Thanks

After surgery, there is no better comfort than my amazing wife, Stacy – a nurse par excellence. But a close second is a scrumptious lobster roll sent special delivery from Maine! Yes, I am SO spoiled – and proud of it. MUCH love and thanks to our amazing friends Fred & Nancy Gale in Boston for this awesome treat!

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Magazine Article

I have some friends who own an inspirational lifestyle magazine called Refreshed San Diego and have been following my health journey. A few weeks ago they asked if their editor could interview me about this journey. I said sure, why not?

The issue came out yesterday, but I had NO idea I’d be on the cover! (I was always hoping for Rolling Stone, but this will do.) I thought I’d share it with you, in case you’re interested.

Waiting for a transplant | Father of eight undeterred by battle with kidney disease

 

 

Health Update

I only have a couple of months until kidney failure. Sorry to be blunt…or a downer. But since going off the steroid, my kidney disease has progressed rapidly. This means that I’ll have to go on dialysis soon to keep me alive until I hopefully get the transplant.

I’m definitely starting to feel the effects of low-functioning kidneys, but generally life is fairly normal. Actually looking forward to dialysis, since it replaces kidney function and should help me feel better. It will totally disrupt my life, but we’ll do what has to be done.

So many have asked what’s happening with the transplant, so let me try to simply explain:

Still losing weight and this week I start the process of being tested to see if I’m a good candidate for a transplant. Those tests will likely take a good couple of months. If I’m cleared, I’ll be accepted into the program. Then folks who are willing to donate a kidney will also be tested. Whoever is chosen, will then have to get cleared after additional testing. So if all that goes well, it’ll probably be later this year or early next year for a transplant.

Thank you all for the love and support over the last year. Your continued prayers for another rough year are deeply appreciated.

These days I have found much comfort in songs from church. So allow me to close with the words of a cherished hymn – one that resonates with where I am…

I’d stay in the garden with Him,
Though the night around me be falling,
But He bids me go; through the voice of woe His voice to me is calling.

And He walks with me, and He talks with me,
And He tells me I am His own;
And the joy we share as we tarry there,
None other has ever known.

Health Update

“You have advanced kidney disease.”

Not exactly the words you want to hear from your kidney doctor. But that’s what we heard…along with:

“You only have 21% of your kidney function left.”
“You’re running out of time.”

So, yes, the steroid therapy that I slogged through this year didn’t work. My condition is worse than thought. The doctor is also concerned that catching the flu or a cold over winter could hasten kidney failure.

[Sorry that this is kind of a downer, but Stacy has gotten upset with me often this year for not fully communicating the severity of my situation.]

All this doesn’t change the path I’m on…heading toward a transplant. It just means that if we don’t get it done in a year or two, I will probably have to go on dialysis.

First step: Lose weight. I’ve lost almost 20 pounds over the last month, so I’m on the way. Before you send your fave diet plan, please know that hardly any out there work with kidney disease. I’m working with dietitians for a customized plan. And I’ve started exercising, including water aerobics with Stacy. We’re having fun.

Once I reach the weight I need to be, we can start the transplant’s loooong process.

The GOOD news is that I continue to improve, in terms of the side effects from the steroid, which I’ve been off for over 3 months now. Each week the effects are either disappearing or diminishing. So life is getting more livable.

Thanks to all for your prayers and support! God is good ALL the time. I am a blest man. This experience had changed me on so many levels, and for that I’m deeply thankful.

Coming Off the Steroid

It’s been a few months since my last update and folks have been asking how I’m doing, so here we go…still on track for a kidney transplant, though it’ll be a few years away. Just did a whole raft of labs last week, but I can’t understand the results. I don’t see my kidney doctor for 3 weeks and we’ll see where I am at that point, plus start the process for the transplant.

I completely stopped taking the steroid a little over 6 weeks ago. YESSSS!!! It’s been really rough as my body reacts to not getting that crap anymore. I’ve been more tired than I’ve been all year. Multiple naps a day have been the norm. My nutritionist put it this way: “You owed your body a lot after those 6 months on Prednisone, and now you’re paying it back with the sleep it needs to recover.” Sounds reasonable. This week has been a turning point, needing fewer naps/sleep. Hopefully turning a corner.

Plus, there have been many other slow improvements: Sleep is much better, swelling in my face has gone down, eyesight is better, and other improvements. But swelling in my feet and legs is still severe, with no sign of improvement.

Continuing the nutrition path as well – eating better (smarter?) than I have in my life. Hoping to be in a better place with my overall health as well through these changes.

Just SO glad that I’m not putting the steroid and all the related drugs in me anymore. And I’m glad for the prayers, thoughts, well-wishes, concern, and overall support.

P.S. If you happen to see my glorious wife Stacy, please give her a HUGE hug, as she has been my rock through this, sacrificing much to help me through it. I am so blessed…

Health Update

I saw my kidney doc today. Basically the steroid treatment has only stabilized my declining kidney function, it has not improved it. So I will finish up the treatment in mid-July, wait a month, do more labs, and then in September start the long process of getting one of my kidneys transplanted. I have to lose 60-70 pounds to be a candidate, so it’ll probably be a good year or so while we also work out the details of the transplant.

Still struggling with the steroid’s side effects, which basically make me feel 20 years old than I am. A lot of adjustments. Also, I do my last round of IV steroid infusions (aka carpet bombing) starting a week from tomorrow, which wipes me out for a few days.

I’ve already made a lot of lifestyles changes – eating better than I ever have – I can still improve, and will have to. But no exercising – no energy to do it.

Appreciate the continued thoughts and prayers, and concern expressed by so many of my friends – in emails, FB chats, cards, in the grocery store, etc. I am a very rich man. God is good…all the time!